now I write together with my mother because I can’t do it by myself. I have a big salad in my head and I do not know if the words coming up are Italian or English or German. It is getting better every day. So as soon as I will be able I will communicate as I used to do before the operation. Today my son Miro played piano in a school-organized event and I spoke English with a couple of parents of his friends as if I was in London and I do not understand how come. But it worked. My main job at the moment, besides doing “Hooommm” (transcendental meditation) is sewing hats. I have already quite a collection (seven). I send you some photos.
All the best and much love,
The number seven has been stuck in my head during this Day. The six single numbers that had arrived to that seven are interesting as they are completely neglecting the eight and the nine that would come after them. But I guess that it is the time that passes by to create an entire week that perhaps describes to me why I have not been able to take that last number out of my head.
It is seven days that I have been living in this room in the large Roman hospital. And strangely it was exactly in 1907 that they had finished constructing all these three story buildings. Their architecture is truly calming as it has colonnades as roof structures of a pathway that leads from one building to the other which are all supported by beautiful columns. During the two world wars it must have been extremely useful to have built a huge hospital just a quick walk away to the main central train station Termini.
As I arrived in the first floor of the neurosurgeon part of this hospital, seven days ago, I walked in with my expectations. It was exactly seven years ago that I had entered and lived in this space and so I remembered quite clearly the role that I would be playing. I was conscious that as soon as I would speak out my name I would be very quickly recognized as ‘one of their patients’. And as I left the house for this new adventure my mother deeply expressed to me that she was obviously going to accompany me. After nodding my head to state her understanding, I very calmly spoke out to her that it was in no way possible. Her own emotions could not accompany my self-made calm during that short journey to the hospital.
My assumptions in entering that building was that I was going to put on my comfortable pajamas, lay on a bed and in that role, at some point meet the doctors who are either covered with a white coat or, if they are in a Neurosurgery day are all kitted up in green cotton and dark blue plastic slippers. As a man laying on a bed, the doctors would pass by with their own crew of assistants, students and mostly younger followers, and tell each other the details of my imminent brain operation.
Every single day of this week my own personal aim was to remember what I needed to actually ask them. I needed to have my questions ready so that when their gaggle would ultimately appear they would not just quickly pass by my bed and leave me overwhelmed by words that I do not completely recognize, understand or even vaguely remember from other such meetings.
So it has been seven days now that I have been expecting to meet any doctors who can calmly explain to me what they need to cut out of my brain and how. But that is not at all what these seven days have been. Nothing at tall. I have learned that the reason why none of the neurosurgeon have come to visit me is that they actually need to see a latest MRI which, in this extremely busy chaotic hospital, has not been possible. There must have been an endless amount of urgent cases that must have pushed me away.
So this is why I have been meditating intensely during the past seven days. In fact I need to thank the transcendental meditation group who have allowed me to very slowly embrace the psycho dramatic narrative world that I am living in. This room has an extremely complex reality and what makes it continuously overwhelming is the uniqueness of each person’s meaning of life. It is in this calm, where everyone is forced to have a relationship with death. All the patients here are profoundly afraid but each one in their own particular way. Their own characters, which I most definitely do not know, have reacted to their clinical prognosis, with their own particular emotions.
It is four of us. Four males. All taken care of and managed during the night and day by females. And in this room there is one of us who is surrounded by machines and never ever moves any part of his body. The other three of us do attempt to just completely ignore his presence but nevertheless we are reminded of his human presence by the voices of those lovely nurses as they do continue to have chats with him while they are taking care of his body and veins.
Last night I had a dream, a flash back as it was almost exactly 7 years ago when I was laying in this hospital with three men… and the young nurses always entering the room for poking and measuring everyone with a good mood. It was in fact this place where 7 years ago I started writing away notes to friends to express my adventure in this hospital where – to this day – all the clocks that are in all the pathways are still stuck on a single time. And this is how I had narrated it before that second operation.
“While I was walking through the endless series of doors, I noticed that there is a clock on the walls of every hallway in the hospital. Partly to avoid thinking of anything more intense, I pondered how these would illustrate the central function that time has in the organization of this medical institution, both symbolically and practically. The problem being when you notice, as I did on my walk, that the identical clocks indicate: 10.20 a.m. or p.m., 9.07 a.m. or p.m., 6.38 a.m. or p.m., 12.29 a.m. or p.m., and 4.04 a.m. or p.m. Not one single clock indicates the correct time” Page 170 of the Finch in my Brain.
In fact, here are the nurses with a machine to check the pressure in all of our ears. And as I am typing away this blog they are asking me to stand up for a few minutes as they are redoing the beds. It was exactly 7 years ago when I started to type away my reality and share it with friends. And I guess that it is an act that, right now I just feel instinctively to do. I am dependent on it and while I lift up my eyes and look at the depression of the new colleagues who are lying on their beds near me I am forced to remember how special is the energy of my super power.
It was from that moment seven years ago that I learned how that strange type of narration could actually end up changing my priorities in my life. It forced me to focus on a part of a my overly dramatic life that would be somehow useful. And by doing that I learned to distract myself from some extremely negative oncological statistics that once again live all around me. While these days my flat mates only can tell me of the potential drama in their life, I quickly find them smiling when I physically show them the various tasks that occupy me. Their faces change as I present them some of my new badly done sowing of fabrics to create a hat, and then continue my smile as I show them how silly I am with my handicaps, which have made it very difficult for me to write a book. So they start telling me of the rhythm they use too cook proper roman food when they are at work and how, back at home they do their gardening surrounded by their two beautiful dogs.
So it was almost exactly 7 years ago that I have been living in this parallel oncological brain tumour reality. It is 7 years ago that I woke up with a complete human reality paradigm shift which now, these days in this hospital I am deeply using as a protection.
Before arriving here I had understood, thanks to my sister that their strange text in the MRI explained that I am here not because I have a further growth of my old brain tumor. This is a different growth. A separate part, not so far away from the other one. It is still on the left hand of my brain but a bit more forward. Closer to my left eye and ear. Mostly, what generally happens in that part of the brain implies that – I might get some of my emotional balance and memory cut away. So, this time around my character could in some way, even if non visible, profoundly change.
And so while typing away this text that I can not read myself, I am forced to remember how every possible handicapped could transform, in some calm way into yet another super hero like power that I will have to, once again find a way to embrace.
And now this transformation is scheduled, I will go to surgery at 8 o’clock tomorrow morning.
Is my new exploration in the world of the Ketogenic Diet just a race for life? Or, actually, right now I do feel that I am doing it because I am embracing some emotions for whatever is new and radical. It was strange and awkward to grow up as a teenager in New York. For me it was particularly curious as I was, for just about anyone, a different and surprising Italian boy who used an odd lexicon and did not every day wear the standard sport clothing and shoes. Which just helped them to make fun of me.
In fact, while my sister and I grew up as teenagers in New York with a unique and strange Italian character, we somehow already needed to catch and embrace particular music and fashion that were not yet in the mainstream. We felt proud of following some punk bands that, just 5 or 6 years later, ended up becoming a mainstream rhythm for everyone. In my last operation a good part of my detailed memory was cut away but I do remember things like… The Ramones and Sonic Youth … and… When I get some wi-fi connection I’ll look it up properly.
So, when I think of maybe trying out new types of cures that have not entered the mainstream I do ask a scientist like Bianca to check out the basic philosophies that follow them. Meditation for example can be seen as a part of a religion or, ultimately just a good healthy exercise. In fact, this morning as I attempted to use the rather weak wi-fi of this hospital I actually received a very surprising e-mail from my sister. She told me “It was a Good timing to ask me for a good article about the dendritic vaccine as in fact I just heard it on BBC radio this morning :-)”
As I listened to Serena’s UK English computer voice reading me that e-mail, I felt overwhelmed by the positive sentence structure that they had typed out. Her voice is flat as hell but that information truly made me raise my closed hand up in the sky, like when your little football team is scoring against the posh one. Now that I have a wi-fi I can tell you that I feel the romantic mood of the Smiths, and the MTV unplugged concert of Nirvana. They just cheer me up, as “I need an easy friend”. It does seem that 7 years ago with the aid of my cool family I might have really caught a strange new way of looking at cancer which might soon become a main stream miracle.
And so, I then asked Serena to read me the beginning of page 159 of the Finch in My Brain -to remind me what I thought about it the first time around- 7 years ago.
I had written this exactly in the place where I am now hanging out and waiting for an operation once again. And yes, similarly to that very moment in this hospital this time around there are also two older men in my room and a third one who we just ignore as only the big machine next to him can remind us that he is still alive.
Here it is:
“There is one experiment that I find particularly interesting, because the researchers are going to use parts of the cancer that currently lives in my head to create a dendritic vaccine. The way I understand it is that the cancerous pieces of my own brain will be transformed in a lab, and then get re-injected into my body, where they will be recognized as normal Aliens who just went out for a vacation. They will recognize and then attack the Alien cancerous cells from within, when they least expect it. I am excited about this, as it sounds like proper sci-fi stuff, and if it works, it will be the beginning of a new way of confronting cancer.”
So, a Ketogenic Diet is strange and like many of these sophisticated trials it does not work for everyone, and in fact it could be dangerous if confronted without the assistance of a superhero like my sister. Actually, now that I think about it I would very much like to see this kind of normal humans publically presented as the new superstars in mainstreamed films….
Hohh I am just listening to the Bad Brains… 😉
It is 6 years that I have been living with a bunch of aggressive aliens who have squatted in my head. The way that I am talking about them is most probably because during the early 80s I grew up with a certain love for comic books. In fact, right now there is a good part of the Marvel and DC characters which are overwhelming a section of the film world, only in part targeting my age group. In fact, as I hang out with my wonderful 10 year old boy he often expresses his excitement for those particular films which all of his friends use as physically agitated role-playing games.
Today I have been told by the top end oncology professor that I have to get ready as in 4 weeks I’ll once again need to jump into the surgery department of the hospital. So, I will again put my faith in that world and attempt to understand the details of the battle in my brain. Considering that after my second surgical war I realized that I could not read the text that I was typing away, with some calm I’ll pull out my new, computer based superpowers – which did allow me to write the book The Finch in My Brain. Yes, this little blog is now making me focus on how my new vision of these battles has now been forced to embrace the true complexity of reality.
And yes, I am aware that in the world of comic books a change of the hero’s basic character is definitely not allowed. For many social reasons a good one must always keep good. In fact, changes are depicted as the outcome of a sinister force that threatens to undermine a noble, pre-existing establishment. Which makes sense as many of them were created during the world wars. Throughout history social outrage has always come out when a paradigm shift is being presented. But that is in fact the only vision that will keep me alive. Yes, some of the superheroes will need to change their attitude, to embrace the different view and who knows maybe even publicly declare their radically different sexual attitudes. And I myself have a “sentiment”, that I want to save the galaxy, so I’ll put on some spandex for this war as I do hope that my new oncological narrative will not scare any of those old school anti cancer pills that are ‘proven good’.
Yes, I am aware that glioblastoma multiforme (GBM), is the most aggressive cancer that begins within the brain (the evil hero). And sadly, what just about every website that I find on Google says is that despite maximum treatment, the cancer usually recurs and that the most survival following diagnosis is 12 to 15 months, with fewer than 3% to 5% of people surviving longer than five years. But I am still alive after 6 years. And, as my oncologist today made me understand it might not be due to my 5 years of very expensive drugs Themodal that has been really keeping me alive.
In fact, what that top oncologist here in Italy told me Today is that the main reason why I am still alive might be that 6 years ago, I took part of a Dendritic Vaccine experiment. Yes, with two brain operations I have a good excuse for not completely understanding the words that deeply explain how exactly this new type of cure works. But, considering that I have today also been told that some new part of the tumor has now started to grow, and that I’ll need to have an operation in one month’s time, here it goes. I’ll attempt to explain why, actually from a quite radical if also ridiculously demonic style I should actually appreciate this new, rather smaller surgery. Oh yea, it will probably be while I am awake once again 😉 So maybe like a super-hero I’ll get to sing a lovely song with a bad tone of voice while they are cutting particular bits from the left side of my brain.
The central part of this Blog is exactly about those particular evil bits in my brain. During the next operation, the lovely crew of the Dendritic Vaccine will be given all the cancerogenous parts that will be cut out. They will immediately bring them to their studio and start working their magic. They’ll turn them into a vaccine. You know, the basic concept of any vaccine is in fact exactly that. To somehow embrace the bad part in a way that the body itself learns how to fight against it. But what makes this drug particularly powerful is that it will be created exactly from the cancer that has been squatting and growing on my own head. It will have grown there, in that area between the part of my brain where memory and visual zone function. And that is why, after two operations I can no longer read or remember what I just typed away just now.
In any case, the advantage of having this operation is? What was it again?
You know, keeping positive thoughts ahead is not the simplest part of the process as everyday it really does need some calm and possibly also some kind of meditation. Fortunately, the computers are pretty cool these days and, with a bit of patience and some pretty flat voice they can give me new powers and remind me what I was attempting to tell you.
Oh yea, now I remember that what I will have to do is to embrace the evil and teach it to come back and fight for the positive side. As it is this rather scary adventure with a surgery that now seems to possibly be the source from which I can stay alive for a while longer by attempting to inspire new research for the entire galaxy.
Many different doctors I met along the way have had radically different visions of my brain, and especially of the essential philosophy they would follow to keep me alive for a bit longer. While most of the oncologists I met think that pills are the best cure, most surgeon are convinced that I actually only need their cuts, and I also do give myself some very high credits for my radical culinary ventures. Sadly, the way that all of these very different paradigms have been presented to me, has made it quite tricky to choose one single survival strategy.
I do understand that there is a big and legitimate issue with the ego of the people who have spent most of their life on an idea, and need to prove that they are the best, but please do hold on a second. While I accept that perhaps I should ignore some offers like the scorpion venom from Cuba, I do have to remember that actually I should not ignore most of the other approaches and views, as there might be some fundamental truths in those as well. Yes, at times it does happen that one of my funky diets disrupts the effect of the pharmaceutical pills but very often it does not, and actually, by concentrating on cooking healthy food the activities and thoughts of my brain stay positive. Which, by doing so definitely can even influence the work of those pills.
I don’t think that anyone – not even the hyper academic thinkers that I met – can deny that the character and attitude of the nurses passing by and keeping an eye on their patients does not positively and profoundly influence the ultimate goal. And so, once we start looking at the new wider consciousness of the profound importance of the entire group, it becomes obvious that the economy should not be an issue. In order to make it work, no single member of the wider team can be preoccupied by financial stress.
It has taken me a while to feel at ease with these thoughts, but ultimately I have learned to embrace the seemingly random parallel complexities of the various scientists and doctors that have taken care of me. While by themselves in their own world they just have to live with the dark statistics on the imminent death of anyone with GBM, now looking at the various tales of different paradigms and styles that I have encountered they seem sincerely all very excited that they have participated and kept me alive.
The main reason why I am aware of all of these new trains of thought is that these days there are some doctors who have started to actually give priority to this type of complex approach. In order for us to embrace one of these extremely complicated realities (like the bacteria playing with my brain with whom I talk in my book) we have to create and embrace an inter-dependency of styles. Where all parts are equally necessary.
Similarly to the present political thoughts and actions, we will have to recognize that complexity just can’t be read or solved by a bunch of single human beings just sitting next to each other in a parliament. We actually will always need a collaboration among a bunch of people to let some form of collective intelligence emerge. Something that neither you nor I could have already thought of, that can only be born by the sharing of information and energy.
‘Normal life’ is truly beautiful. Every day I love it. I like walking into a room and just being a ‘normal’ person. Yes, I have always presented myself socially through my hair, beard or clothes as a slightly odd dude, but that has always been in a spectrum of ‘strangeness’ that people can recognize or talk about with their own opinions or references.
Six years ago, my obvious and fun social dynamics changed drastically. It was truly mind-boggling to constantly see how people’s faces changed radically while I was narrating, in the calmest way I could, the oncological statistics of my own life. I was aware that using the word ‘death’ would bring sadness, but as my voice came out of my mouth their character, their face, the eyebrows and the rhythm of their breath just astonished me. To make it even worse, once I had put out that basic piece of information people seemed so saddened that they couldn’t even hide or break the surrounding atmosphere by walking away or picking up their phone. What could they say? What could they have asked? There was no doubt that I was the one who had the responsibility to somehow take them out of that space.
My first attempt to break that sensation, to get friends, relatives or random people back into a ‘normal’ reality, was to pull out my IPod and show them the image of my last MRI – so that we could perhaps think about having a laugh at the fact that the big hole in the left side of my brain did look like a bird. While for about 25% of the people that trick did work, I had to come up with something for the remaining 75% of the audience. Sadly, I never really found any visual or verbal narratives that worked, and so to the damage of my marital relationship I used my – ‘I am tired’ card – and just stayed home.
As I had forced the lives of every single member of my extended family to change, I had to find a way to manage my own guilt. It wasn’t really ‘my fault’ but all these people’s lives were wrecked on so many levels- physical, emotional and economic.
I spent some time with a therapist, but I actually realized that the people around me needed to share their drama more than me. It might be strange but actually, often the family members need more support to embrace the changes than the ill person themselves. Along the way I had ran into a few people, partners or family members, who by joining support networks and sharing their stories managed to pull themselves up.
I guess that we, the ‘ill’ people, just have to find our own paths to stay optimistic and distract ourselves from the oncological narrative. Ultimately, it was only that 25% of people who allowed me to talk about my thoughts and my projects. These friends aren’t any ‘better’ than anyone else, they are just able to put their strong emotions aside and embrace my new reality – my explorations of strange philosophy, a new, darker, sense of humor, my impulse to badly re-stich and sow my old trousers and jackets and my new relationship with my computer. I had been writing nonfiction and fiction all my life and my fingers knew automatically where to go even if my sick brain could not read it back. So I very often took rescue there with Alex, the computer voice that read back to me all the misspelled words and never complained about my need to explore adventures with Neil Gaiman’s character Death.
I understand that we live in a world extensively based on being able to read. However, I only realized how reading is actually an extremely complex operation when I woke up in an Italian hospital, after a surgery to my brain to save my life. Yes, I still can’t recognize any word I have just written on this Blog, but considering that I am still alive and typing away when by all Oncological statistical accounts I should not be, I have had some longer amount of time to discover the nature of this particularly popular skill – which I no longer have.
If I had received a contract saying “by cutting away your capability of reading, we’ll offer you a longer life span” I would have definitely signed that contract, as I believed that relearning to read would be “a kid’s game”. Sadly, it hasn’t been as simple as that. It’s five years now and I still need Alex, the computer voice, to read back what I have just typed.
While reading the first two paragraphs of this Blog you also did not really think of all the work your brain was doing for you. So, during this little pause, let’s try to imagine how the school teachers have the gigantic task of showing their distracted students how a sequence of letters becomes a word. During the first few years they must invent ways to allow their students to stretch their brain in a myriad of different directions to speak out each word – each sequence of text. And on top of all of that, they have to stay flexible while confronting our multi cultural society as each person goes through a slightly different process while reading. (If I will remember, in a different Blog post I’ll talk about why it makes sense that in this moment in history prisons are full of dyslexics).
I realize that quite a few of the doctors whom I met along my adventures grew up following statistics, and so have a really hard time with culture as different people approach issues, thoughts, or what I now call fundamental guestimations in very different ways. (Yes, I know, guestimation is really not a word that doctors like.)
With a lot of meditation, I have accepted that we must embrace complexity with calm if we want to understand all the different and essential stuff that each cerebral lobe does. For example, here is the part that I actually remember of my problem with reading. 1) In the left temporal side of my brain (where I have a large hole) the words are usually connected with their significance. 2) The hole in the left side of my brain actually means that I have a reduction of the visual field on my right eye, and which means that the part in the back of the brain -that is called the occipital lobe- now has a hard time visually interpreting the letters. 3) By not being able to see the whole range of text the meanings of words are often confused.
To be sincere, a good part of The Finch in My Brain will always remain surreal for me as it will remind me of my love and hate relationship with text. But, generally, I am learning to appreciate the complexity of all parts of our body, our social and environmental relations and particularly the energy and love of the fantastically magic and underpaid elementary school teachers.
One thousand word article about my little sun helping me deal with my new realism (or is it reality) after brain surgery.
“Ok, tuck in. Ready? Once upon a time, a long, long time ago there was a bau bau … Miro…?”
“I mean in English it is a…”
“Ohh yea. A dog.”
“Thank you. That’s what he was. There was a young little dog who could always be found wondering the streets of the big city. He would look around, discover some left over food and occasionally even find some fantastic bits. One day, he saw that a a gaggle of similar creatures were following their mother, and did feel a bit sad, but then he spotted a piece of tomato, right there on top of all the other trash of the Pizza shop, he gladly distracted himself.
He would bark very loudly when those other little animals you know miao, miao… would attempt to take his bits…. Miro?”
“ Until the day he crossed paths with an old tired …Miao… Miao “
Miro quickly interjected “ yes a cat… ““Ohh yes. Cats ”
“Yes. Exactly it was a big, half blind old Miao, miao, who is in no way afraid of anyone else”.
A few days after arriving back home from the hospital with a big scar on my head my sun, while cuddling in bed put his hand on my scull and started to touch it. He asked me “does it hurt Daddy?”
“No. Not really but do be careful, as… it’s ‘fragile’”. How could I talk to my three year old sun about what had happened. How could my boy deal with the complexity of a very aggressive type of brain cancer, when even I was not completely clear of what doctors and statistics were telling me. I couldn’t tell my sun “don’t worry, everything is fine”, because it wasn’t. In fact, it was him, and his imaginative attitude towards life that really did rescue me from the bleakness of reality.
I guess that the tale about a little dog and an old cat has already elucidated, to you reader, how my sun and I have developed a new lexicon to confront some of my amazing new handicaps. In fact, my issues with a very bad short term memory, not having any recollection of the names of people, vegetables, most animals, colors and streets have now all become parts of our private adventures while walking towards school. Without too much philosophizing, I realized that while hanging out with Miro, my various new handicaps have to always become superpowers.
One of the handicaps that was particularly curious for him from the beginning was my lack of reading. While up to that moment Doctor Seuss stories had aided me in my pursuit of raising my sun as native English speaker while living in Italy, Miro did not care, he just knew that when daddy laid down next to him with those books, usually rhymes would start coming out. But sadly now, when daddy attempted to read him those stories, his brain did not like them here or there, it did not like them anywhere. He would not, could not with his eyes, not with glasses or even bright light. And so, very quickly we discovered that inventing good night tales of young and old animals, was a great source for our good night stories. In fact, he often seams to follow these bespoke tales even more than the ones printed on illustrated pages.
A few weeks after I had come back home, Miro, without any particular change of presentation started to ask me about the lovely doctors who had taken away the ‘bad stuff’ from my head, and just a few minutes into my story, as he looked intensely in my eyes, he touched my head and exactly in the same earnestness said, “ I am going to take care of my trains now. We’ll continue this at some other time.” And, just a few steps away started with “Brum… Brumm… “. As a three year old his attention span for such discussions was four to five minutes maximum so, I too could feel satisfied with that information and move on to contemplate other things like what we were going to eat for dinner.
He had no problem accepting that Dad now had to take at least two naps during the day, and so when he would go into his fantasy world of trains and Legos, he would now fantastically remember to keep the “Bum, bum..” to a lower level of intensity.
Recently (he is now eight) I saw him talking to some of his friends that had come over for dinner and he was telling them quite seriously about the surgeons that operated me. I have no idea how his friends read his tales, or how he remembered the details of those events. Up to this day, I have attempted to answer his questions sincerely as they arise, without hiding anything from him. While we were walking through one of the beautiful parks of Rome, he asked me “Papa’, are you going to die?”. Just another question that surprised me but, I guess that the location and the tone which he had selected made it ok for me to tell him “Well, in theory they had said that I should already be dead…” and while standing next to him with my shoulders all broadened, like a super hero “maybe they cut all the bad stuff out, and I will die when I am… old.”
I am not sure, but he really does not seem afraid of death. He enjoys becoming every kind of character, even the really bad ones, and he has always allowed me to follow him in his transformations of reality.
Then last night he asked me to continue the story of the night before. Aware of my bad memory he quickly narrated to me the basic story turns and the details of the two central characters, he even told me that they were called Tom and Jack (which I completely did not remember). Nevertheless, so continues that story of the old cat, who, while believing that he is teaching that young dog new tricks, is actually learning how to view his own history differently.